Forums:
This is a poem I wrote to IC in few months back:
Dear disease,
Instead, they told me nothing was wrong, all the tests were fine. I wanted to believe them so I tried to ignore you hoping you would leave.
I ignored you the best I could, and denied all the pain I was in.
I could no longer ignore the bathroom had become my new home. Sometimes 50 times a day, you kept me away in fear...what is happening to me? Will I need to live like this forever?
It was not long before all the new symptoms began. As if the pain, urgency ,and major frequency were not enough..
Off to new doctors once again, they tell me I am nuts.
Newly married and full of ambition and hope, I tried to ignore you once again...Hoping you were some kind of sick joke.
It was not long before you came between me and every close relationship I have. Not only have you stolen so much from me, but my husband is forced to helplessly watch as nothing he has can cure me of this insanity.
When I try to talk about you to my friends, they shut down and change the subject..No one wants to believe things like this really happen. Even though they care, they know not what to say...How can I expect them to understand something doctors do not even get.
Depressing it is, when people pretend you aren't real, but maybe they are just ignoring you because that is how they see me deal with you. When some kind heart does care to ask..I cant even find the words to share the pain I have been in.
Alone and fearful is how I privately pray about you. The more I ask for healing, the more I feel let down..
You came as soon as I became a Christian, and I thought God had another plan for me.
Now, I cant find the time to write, because I am so stressed and trying to figure you out.
Trying to take care of my kids and home can sometimes throw me over the edge..the stress of doing it all in pain makes me want to curl up and lay in bed.
So, I push harder..things must get done.
4 years pass, and still you remain.
Lord, I keep praying and I am beginning to see some of your hand in all this.
Finally, I find natural health doctors who understand my pain, they offer me a bit of hope...but no magic pill will there be to take you away.
Healing will take a lot of time and patience, and much work from me.
Finally the doctors admit you are real..they tell me you are incurable, that I am stuck with you for life.
I refuse to believe them, I will not give up hope. God made me for more...I have to believe..
One day you will be a distant memory.
Great Poem
Melissa, I enjoyed reading your poem! You are a great writer. I too have felt the same. Hope deffered makes the heart sick, but when the desire is fulfiled, it is a tree of life.-Proverbs 13:12
Poem
I really enjoyed reading your poem. That about says it all.
Dear disease
I loved your poem. You expressed so many things that i feel but do not know how to put into words. Thank you for your sharing with all of us.
I have been following your posts and am so excited that you will see Matia soon. You will love her! She is such a gift!!!
Thank you
For sharing your poem. It so describes it for me, too, especially about the people around me and their reaction to the disease. I'm so glad I'm not alone with this.
Melissa
What a moving letter/poem! You are gifted writer and its great that you are writing a book! Maybe you should write about your IC journey - I keep really good notes in my treatment with Matia in my journal and having those feelings written down make them valid and real ( not in my head - imaginary). You are right! You certainly have a great mission and cause ( God's plan for you) - in many ways and contributions in this life. In a really simple elegant profound way I kind of feel that we all have some special destiny connected to IC. It could be a really small but meaningful chapter in our lives - that we find in the process of our returning to balence or it could be about supporting others and finding compassion for those that are suffering or it could be our time to reflect on our life and our direction spiritually or physically or emotionally or all of those things. It offers so many facets of things to think about and employ in our life. It can awaken an appreciation of life so deep - it can awaken creativity and joy and it can take us to the depth of sorrow and misery. It is a spectrum of an experience and one that feels like you are being literally remade fiber by fiber - or like one is being fired in a kiln and tested to the utmost. IC can be a catalist in your life for the most positive and good forces dreams and actions imaginable. I feel that everyone who goes through treatment or chooses to live and make the best of their life in spite of its challenges are full on heroes to the nines. IC can be so hellish and joy destIcroying- but I am trying to enjoy my life even with this chronic illness. I'm done with waiting to be fully better to do this. IC has taught me to live in the now and never take anything for granted and to be grateful for my blessings. I don't know if I would have reached these revelations which are pretty precious without it. Its having these kinds of thoughts which make me feel like it is a part of my healing to be grateful for this challenge and also t be able to move on and out of a thought pattern of someone who is chronically sick. I was sick a long time - and started to over indentify with IC as being this permanent part of my life. While I am certain that being in balance healthwise it wlll be necessary to maintain good habits but I am embracing as much as I can thinking of this as a temporary state and moving on with my life. I chreish this space for healing thoughts and ideas. Thank you Melissa and everyone here! Mary
Honeybee-
I could not not have said it better myself. I am truly going through the refining stage in my life with IC and I can see how it is transforming me for the better as I submit myself to the lessons to be learned. I am starting school this spring (part-time) for counseling and some people think I should not add it on top of everything else in my life, but actaully it is keeping me motivated to heal from IC and I am not so focused on the disease now. I am excited about life still even while living in this state on uncertainty with IC. I am so grateful for everyone that shares on this site, words are powerful and there is a healing in knowing we are not alone.
Dear Disease
I felt so totally alone before i found Matia and all of you on this website. I pour over the entries...looking for more understanding of this disease...and more importantly warmpth, strength and caring from those who post. God does not want us to be alone, he does sent us his love through other people. Thank you all for sharing.
I agree
I come to this site every day reading different things, it gives me so much comfort. I am so greatful Matia put this together for her patients. I am having a very hard bad day today..struggling big time with the diet again...ugh..I cant wait to see Matia next week!